Architectures for Life with 23andMe, a Report - part 1

On the 17th of April I attended a lecture given by Anne Wojcicki, CEO of direct to consumer genetics company 23andMe [2].

The event which was entitled "Deleterious Me: Whole Genome Sequencing, 23andMe, and the Crowd-Sourced Health Care Revolution" was part of the Science and Democracy lecture series [3], organized by Sheila Jasanoff [4] at the John F Kennedy School of Government here in Cambridge Massachusetts. The series is "aimed at exploring both the promised benefits or our era's most salient scientific and technological breakthroughs and the potentially harmful consequences of developments that are inadequately understood, debated, or managed by politicians, lay publics, and policy institutions".

The lecture was followed by comments and questions to a distinguished panel and followed by a workshop hosted at the Harvard School of Engineering and Applied Sciences.

In this post I would like to narrate the proceedings and look at some of the issues raised over the two days.

Ann Wojcicki's lecture opened by asking for a show of hands from the audience about how many people had had their genome sequenced either partially or fully. To my great surprise a large percentage of the people in the room raised their hands to the partial sequencing question, and a few had been fully sequenced. It should be noted however that many of the world's leading authorities on the subject were present, including George Church and other members of Harvard Faculty and these seemed to be the only ones that had conducted a full sequence, but I would say that at least 30% had a partial sequencing.

During her lecture the CEO repeatedly stated that her company was a research organization, stating that they could do statistical analysis of data in a very short period of time because they had collected an enormous data bank. Her stated goals are to improve health care by conducting research using this data bank and through collaborations with both drug companies and education and research establishments.

The lecture was very much a sales pitch for the product, Wojcicki spoke in purely business terms, product and service terms were abound, and users described as customers. She explained that the service she offers helps people to understand their ancestry, percentage of different types present in their DNA (Neanderthal, Asian, African for example) and to determine who in the family they had inherited certain traits from.

The tests carried out on the DNA data also tell an individual if they are carriers for certain diseases and tell them about mutations in their DNA. What she showed next in her Power Point could be of great interest to readers, as the customer is given access to a data sheet about mutations and the statistical relationship to a disease due to that mutation.

The data is presented in percentages, mutation A leads to 20% rise in probability that the customer will develop Parkinson's Disease, or 0.1% risk of breast cancer or any other disease you might like to mention. I must admit that i could not really understand the data as presented however.

The lecture was well received and roundly applauded.

The panel intervention took the form of a short speech delivered by each member followed by a discussion.

The first speaker was Jeremy Greene [5] of the Harvard Medical School, a historian of science. He described the 23andMe project as revolving around the problem of how we feel about risk. He talked about the debate surrounding Pan Ethnic Carrier Screening [6] and the ethical implications of giving someone the information that both this and DNA analysis produces, arguing that we have moved from an externally visible sphere to an internal one. He also talked about the implication of risk moving into the sphere of population and public health.

He finished by making several clear points and I would express them as the following. What we are witnessing here in the convergence between risk and disease. The problem is in how to assign value to the information given. What are the limits of the crowdsourcing model that 23andme use to statistically analyze their data? What agency do they (23andMe) have as a company, do they become producers of knowledge, and if so what rights do their customers and DNA donors have over this knowledge?

The second panelist Jonathan Zittrain [7] of Harvard Law School argued that the widespread marketing and use of the techniques under debate might lead to an increase in the patenting of genes and gene testing techniques, as owners of the patents can then claim money from people offering tests and diagnosis on the basis of their patented entities. He went on to say that the database collected did however allow research on a grand scale, and called for a kind of hacker culture with individuals tweaking models to see if they can see relationships that would otherwise go unnoticed.

The third panelist Archon Fung [8] of the Harvard Kennedy School raised the problem of false certainty in the results seen by customers and mentioned the work of Stephen Pinker [9]. He also raised the issue of how the information will be received and interpreted by the customer. He went on to accuse 23and Me of exploitation in taking people's DNA material and using it for research purposes that may lead to someone making a lot of money. He in fact suggested that they should pay their customers for their DNA data. His third major point touched upon the problem of equal opportunities, stating that large organizations (insurance companies for example) might use the information to create in-opportunity, treating certain types of individuals differently based upon the information discovered.

His fourth and final point was one that is often very close to the interests of the Bassetti Foundation, that of governance. He asked if large scale projects and data bases such as these should be governed purely by the logic of profit. He brought in the ethics of bio banking and their goals, mentioned similarities to the University of Columbia's giant bank and asking whether the general population didn't have a right to generate the norms governing their use and storage rather than the organizations themselves.

Sanford Kwinter [10] of the Harvard Graduate School of Design, the fourth and final panelist, delivered by far the most scathing attack of the evening however. He mentioned problems that Spencer Wells [11] experienced with his Genographic project [12] despite working with what he described as a tight ethical framework, something that 23and me were not described as doing. He claimed that the UN Permanent Forum on Indigenous Issues [13] no longer participated in the project because of diffidence: The data extracted from DNA analysis could easily be used in a negative way. He talked about the tests offered by 23andMe as analogous to a betrayal of ourselves. He said that the business strategies were aimed at making us surrender the very raw materials of existence to corporations, stating that through the project DNA had become socially invested. He argued that through the logic and strategies followed by 23andMe DNA is no longer an object but a social arena. He went on to say that the client is a resource and should be protective of their lives and implicitly called her a predator. He stated that the mandate to communicate was being exploited and raised issues of contractual rights, liabilities and privacy, stating that all of the above were being in some way usurped by a commercially constructed logic.

In her response Ann said 3 things that I feel are of particular significance. She used the China argument (well they are doing it in China, we don't know what their policies are and we could be left behind, a logic of non-ethics that I have heard before and do not support), that the information was useful because you could make provisions by buying the right type of health insurance and that doctors were sidestepped in the process because they are the bottleneck that slows her research production down. From my point of view these could all be seen as contentious remarks.

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